Max had his barium done on Friday 20th May and was a very brave boy. I managed to mess up and fed him his morning feed when he was supposed to be fasted, I was so annoyed at myself. As it turns out the dye could still clearly be seen so we didnt have to reschedule. Im not sure what I was really hoping for but it showed that Max does not have reflux so the retching still remains a mystery to us. The procedure itself is not painful in any way but its distressing to Max (and me)as he has to be held down so he remains still whilst they take a series of x-rays. We had to leave twice and come back again so he was thoroughly hacked off by the last check of the dye especially as he had fallen asleep in his push chair and i had to wake him :(
Max was scheduled to have his endoscopy done on Thursday 26th May but he has had a prity bad cold and they don't like to put him under anaesthetic when he is so bunged up so it was decided to cancel. Its not a long procedure by any means but i'm quite happy to wait for a bit as I feel like we've been at the hospital loads lately and a break is no bad thing.
We had an appointment on the 19th May with the physio who seemed generally happy with Max's progress. He is slightly behind with regards to walking but who wouldn't be I guess after what he's gone through? We've always been amazed at how well Max gets through all his hurdles and unexpected set backs despite still being so young - I know just how difficult Simon and I find it all at times. He is almost there with his walking, often trying to stand on his own for a couple seconds so now he just needs to take the steps. He has a push along baby walker which he likes to push around the living room although he does look a bit 'monster mash' as his legs do their own thing! He just needs the confidence to take off on his own which will come in the next few weeks im sure. His next appointment with his physio is not until August and i'm sure he'll be running by then. After that we no longer need to see a physio anymore, it will feel weird as it has always been part of our hopsital visits/routine and I enjoy seeing Maureen too. He will continue to see a dietician, respiratory dr, surgeon, speech therapist and occupational therapist until he is older - so I guess I should be glad he no longer needs at least 1 specialist!
We spent the weekend in Edinburgh which was a really lovely break from home. The routine was the same, feeding every 3 hours etc but it was fun to do things together and see Max enjoying himself at the Zoo and spending time with his grandparents.
Max's new date came through yesterday for his endoscopy and stretch so we are back into hospital next Thursday at 8am for his procedure. Its something we've pushed for as we still want to see if there is something stopping Max eat and this particular procedure was last done over a year ago. I think we both feel it might draw a blank but its something we need to rule out again. As for the stretch, this is from his fundoplication done in Jan 10 and may also help with his retching.
Max is actually starting to lick foods more and is always keen to try what we are eating. He even gets quite angry when we eat which is a very good sign that he is starting to understand eating. He was desperate for a bag of crisps at the supermarket checkout today so I bought them and he was so excited. To an onlooker he must have looked like just a normal toddler getting a treat but I was just so happy that I could give him some food that he wanted :)
Will update with results on Max's endoscopy once we have them.
Katie x
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